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Internet Research is Valuable

I must say that I completely disagree with any doctor or person who advises against reading other patients' experiences on the internet. From CLL to Morton's Neuroma (to spiritual and emotional abuse), I have found it extremely helpful to read the experiences of others. Yes, you have to sift through all kinds of information. There are horror stories as well as the helpful stories. Not all sites are medically reliable. But it has never been that challenging for me to recognize the ones that are vs. the ones that are not. The key is being thorough in your research and not basing any conclusion on simply one patient's experience.

It reminds me of something a history professor said to me in college. After reading a book that left me reevaluating a lot of assumptions I'd ignorantly made about American history, and pretty much blown away by information overload, he very wisely advised, "Remember: This is just one author and one book. Don't arrive at any conclusion based on one person's interpretation of anything. Keep reading and learning, comparing and contrasting information. But don't let one person completely sway you."

Information is powerful. Ignorance may be bliss, but it's blind bliss. I don't understand why anyone chooses ignorance when we have so much information at our fingertips. People advised me against reading so much on the internet when John was diagnosed with CLL because it might scare or worry me. Hello! What is the bigger threat? Worrying? Or making uninformed life-altering decisions about healthcare and medical treatment? Yeah, I've had anxiety after reading certain statistics or absorbing the details of someone else's suffering. But through it I learned to put my faith back where it belongs (Romans 8:28). And I believe I have played a valuable caregiving role in my husband and mother-in-law's CLL treatment. I'm not saying this for glory, but I am the one who pushed assertively for John to get into the CAL-101 clinical trial. And the reason I knew about it was the internet and specifically an internet friendship with another patient. That was a critical point in our journey, worthy of mentioning, because stem cell transplant was on the table after John's failiure to respond to FCR (gold standard chemo for CLL). And CAL-101 at the lowest dose given to any patient (50 mg.) has completely controlled John's CLL for two full years. (I have posted pictures before to show what his neck looked like prior to treatment.) I don't point that out because I want a pat on the back. My reward is a healthy husband and mother-in-law. But I do point it out, whenever those around me forget, because I take my role seriously as a caregiver. They are both enjoying good health and full lives. But things could be very different.

I think three years is the longest any patient has been taking CAL-101. And there is no guarantee that it will work forever. But Kinase Inhibitors are the big thing in CLL right now and there are others in development that work through different pathways (or receptors). So a patient may stop using one and have success with another. From everything I've read and heard (from the medical experts and specialists), this is an exciting time in the treatment of CLL. Optimism is high that these oral medications could replace chemotherapy for many patients in the foreseeable future. My husband and mother-in-law were aware of these trials because I was constantly researching the internet and reading about other patients' journeys. Prior to that, we discovered that we had a CLL specialist, Dr. Ian Flinn, in Nashville because of the internet. And I learned the value of consulting a specialist from other patients on the internet.

Obviously, our CLL journey is the biggest reason I strongly disagree that it's "dangerous" to read and research the internet for medical information. It is also the biggest reason I share so much information on my blog. I'm grateful for the valuable information that was online for ME to find when I was searching. And I want to provide helpful information for others who are just beginning their search. I have also blogged quite a bit about my recovery from Morton's Neuroma surgery because I don't want there to be only horror stories online. And sometimes you get enlightenment from another patient that you don't get from your surgeon. Usually, your surgeon has only performed the surgery. He has not experienced the surgery.

I am so glad I searched "realistic expectations following Morton's Neuroma surgery" this morning. I found reassurance that my recovery is proceeding normally. I was also reminded that even my doctor's expectations could be a little unrealistic.

At my follow up office visit on Tuesday, Dr. Yu seemed pleased with my recovery and gave me the go ahead to do as much as I feel comfortable doing. He has always said I could expect sore feet and some swelling following increased activity for two or three months. Well, my surgery was March 6 and I don't think I'm two weeks from having normal feet. As I've said before, I'm not in pain and I'm walking well. But I'm quite a ways from normal feet. I'm sure having the surgery on both feet at the same time is different from having one foot to recover from, as Dr. Yu pointed out. But sometimes I feel discouraged that I still have days when my feet seem to bother me more. It's especially hard after having one or two good days. John says I'm the eternal optimist. And it was the same way with my frozen shoulder recovery. But when I have a better day or days, I automatically think that I'm over the hump and it will only get better and better from here on. That is not true of frozen shoulder and it's not true of neuroma surgery.

I have been a little bit bummed out the last 24 hours because of a weird sensation in the fourth toes of both my feet. I told Dr. Yu that I occasionally have the sensation of my fourth toes going to sleep. You know that numb feeling that isn't an absence of feeling but a weird feeling. He said that's normal and is a result of having a healthy nerve between the fourth and fifth toes. That didn't totally make sense as an explanation to me. But I'm sure there's a lot I don't understand about nerve tissue and interaction between the nerves. It didn't concern me too much because it wasn't constant. It came and went. However, from Tuesday night to today (Friday), I've had that sensation in both feet almost continually. It's annoying. And my concern has been that it's a developing side effect of the surgery. It doesn't seem to me like I should have worsening of any type of symptom at this point. In my mind, it seems like I should just feel better every day. So when I don't, I start to wonder if a complication is developing. Obviously, I would choose some numbness in my fourth toes over sharp, stabbing pain in my feet. But I would prefer neither. LOL.

So I was relieved when I read this patient's admonition to other patients about realistic expectations:
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To be quite honest, my doctor told me the actual complete healing time was 12-18 months. And it was right at 12 months before I NEVER noticed any issues. You will have swelling for quite some time...off an on. The healing with this surgery is not linear but up and down. In other words, it can feel great for a few days and then not so good. It's a nerve that has to heal so....
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I need to remember: Not linear, up and down. Good days. Bad days. I especially need to remember that on the days when my feet need more rest than I think they should. Like today!

I massaged my feet vigorously last night, first with vitamin e oil, then with moisturizer. And I have spent the whole morning off my feet. (Yesterday I was on my feet all afternoon going to Walmart and Sam's.) The toes feel better for the first time since Tuesday night.

I am making several pans of lasagna in the morning for the staff at the dealership and another for a friend who is having outpatient surgery today. I think I will see how much I can do while sitting on a bar stool. And, other than riding my exercise bike, I think I will give my feet a full day of rest today...guilt free!

Comments

Hi Shari, I chuckled about the doctor telling you not to look on the internet because you can come across horror stories. People mean well, but still, lots of times they (even doctors) don't *really* know us well enough to be advising what we should and should not be doing, especially when it involves our health. I really have to just smile and nod. lol.

You sound like you've got your foot surgery continued healing process all figured out in your mind so that you won't be discouraged as your healing continues. That's a good feeling.

I'm moving along toward the Cal-101, Phase 2. Today I had my bone marrow biopsy so I'm limping a little! lol. Thanks for the pictures of John's neck before/after. Very encouraging.

Bonnie, I'm having a good weekend and I've had a couple of really good days with my feet as well. The sensation in my fourth toes of the toe being "asleep" has gone away again. Glad to hear things are proceding toward the trial. Glad you got that BMB over with! Hope the soreness is better!

More than anything else, I want to be a true disciple of Christ; cultivating love, forgiveness, mercy, compassion, unselfishness and humility into every aspect of my life. I am happily married to my knight in shining armor and best friend, John. I am proud to be Danny's mom and Rebecca's mother-in-law. I love being Grandma Shari to my four grandchildren. I am a homemaker, volunteer, writer and "foodie." I love to cook and eat great food. And since 2007, I have been learning all I can about CLL in order to be the best patient advocate possible for my husband as he battles Chronic Lymphocytic Leukemia.